Archive | Down syndrome

Thinking About Disability

I’m still here.  Life has been incredibly full and busy.  Several people have contacted me to ask why my blog was set to private.  In a nutshell, a couple of bored teenagers found it and were using it for immature ends, so I put it on the down low for awhile.

So.  We are all settled in our new home, starting to meet people and get to know some of our neighbors.  We absolutely love it here – this was such a great move for us.  The kids are all settled in, too, and all but Finn are busy with outside activities they love.  I’ve been on the hunt for something to get Finn involved in, and I’ll tell you, it’s tough.  We have not had a lot of luck in the past finding activities that work for him – in pretty much every case because accommodations have not been readily forthcoming.

I have a feeling that he would enjoy basketball (the boy can handle a ball like nobody’s business), and I looked into our local Special Olympics for a basketball program for him, but it’s a winter sport, and I’d like to find something for him now because I think he needs an outside interest and activity for numerous reasons.  So, I’ve decided to look into horseback riding (and I don’t mean hippotherapy; I’m not looking at it as any kind of therapy or intervention.  I just want to find an activity that he enjoys).  We live in horse country – we are surrounded by acreage and pastures and farms and stables, so it seems like a natural option.

However, not every stable that offers horseback riding lessons accommodates kids with disabilities.

On a recommendation, I contacted a local stable that might have a riding program for kids with special needs.  I sent an email explaining who we are and that Finn is an 8-year-old boy with Down syndrome, and is there a possibility of Finn riding with them?  I got a very nice email back explaining that they “don’t have the equipment or level of skill necessary for severely disabled.  We only support high functioning kids.”

It left me feeling very sad.  While there isn’t anything rude or wrong, exactly, with the response (it was an honest, straightforward response born of entrenched cultural/societal views of disability), it left me wondering how exactly to respond.  Disability is a social construct; people are disabled only to the extent that accommodations and access aren’t made available.  And what, exactly, is “high functioning”?  It’s a totally subjective term.  It’s not like there’s a test that neatly and efficiently places people into these “high functioning” and “low functioning” categories; it’s largely perception.

Still, I suspect I understand what their perception of “severely disabled” and “high functioning” looks like, and if I’m right, Finn would probably fit into the latter box.  But it’s all bullshit, isn’t it?  We all have strengths, and we all have limitations.  We all excel in certain areas, and we all need extra help or support in other areas.  It saddens me to again be hit with the reality that Finn will always be most limited by other people – not by Down syndrome.

It turns out that he may have an opportunity to ride at the stable next door to us, where Annabelle and Lilah both ride – and I wasn’t asked by the proprietor there which category Finn fits into.

On “Finding Dory,” “Me Before You,” and Portrayals of Disability

Finding-Dory-Disney-pixar-2016I went to see Finding Dory yesterday.  Because I had already read a handful of blog and Facebook posts expressing negative feelings about portrayals of disability in the film, I went into the movie theater wary.  I’ve also read so much positive reception about the movie – and especially its handling of disability – that I was also eager to see it.  I sort of wish I had seen it cold – that is, without having read or heard anything about it beforehand, so that I could truly make up my own mind without being influenced by anyone else’s perceptions.

In any case, here are my thoughts, but first a brief summary:  Dory, a blue tang who was featured in 2003 blockbuster, Finding Nemo, mainly as comic relief, has some disorder that causes her to have short-term memory loss.  Finding Dory is the story of how she became separated from her parents when she was young, finally realizes years later that she once had parents who loved her very much, and goes in search of them.  Nemo and Marlin from Finding Nemo are supporting characters in this story, as well as a host of other characters, but Dory is the star.

I loved the movie.  To borrow from the lexicon of the day, it got me right in the feels.  There were numerous parts that made me tear up, and one part in particular where I had tears streaming down my cheeks and I was literally biting my tongue to keep from sobbing out loud.  Maybe it’s just me; despite my rough exterior, I’m a marshmallow on the inside.

My thoughts on the problematic parts of the story (that I’ve read about, anyway):

There is a scene in which Dory wants to join a “school” of other fish for a field trip, and she is encouraged to find something else to do, because her disability makes it too difficult for the teacher to look after her.  Yes, this scene is heart wrenching for any parent who has faced similar situations of exclusion built on excuses with their own child in school and other settings – which I have, of course, with Finn.  I think this scene did a good job of showing what that kind of exclusion looks like, and in the end, Dory does join the class, because inclusion can work when there is a willingness on everyone’s part.

Within that segment, there is a scene in which Dory gets knocked out, and the other “kids” groan when they realize she’s not dead.  I don’t know … I suppose much could be made of this, but I didn’t get the sense that anyone actually wanted Dory dead, it was more like kids using something in poor taste to try to be funny, which kids actually do.  I mean, in the end, everyone is rooting for Dory, so clearly none of them really hoped she was dead.

There is a whale shark named Destiny who is so nearsighted that she’s constantly banging into walls, and it’s delivered in a way to get laughs.  Being a severely nearsighted person myself (my prescription is -7), I guess I’ve never thought of being nearsighted as a disability.  To be nearsighted is so common that seeing a person with glasses barely registers as different from seeing a person without glasses.  So this part of the story really didn’t bother me, and I think it’s okay to laugh at ourselves and at the pitfalls of being flawed creatures to some extent.  Throughout the movie, Destiny is helped by a Beluga whale (who has suffered a head injury) who navigates for her and tries to help her avoid banging into things, so I actually think there’s a very positive message there about helping and supporting one another.

Perhaps the most glaring offense in the movie is the portrayal of Gerald, a sea lion who … I don’t know what his “condition” is supposed to be.  Because I had read something before seeing the movie about Gerald being “obviously” intellectually disabled, I saw him with that bias (which is why I wish I had seen the movie cold; I wonder how I would have perceived him without that influence).  His eyes are somewhat askew, he doesn’t speak, and he carries a child’s pail – all of which could be perceived as embodying crude and offensive stereotypes of intellectual disability.  I get it, and it did bother me somewhat, but I’m guessing not as much as it bothered some other people.  It’s possible to perceive him merely as “goofy,” put in the movie solely as comic relief.  His purpose in the story (and he’s really a minuscule part of the story) seems to be to provide the pail, which is needed to transport Marlin and Nemo from the outside of a Marine Institute to the inside (they’re searching for Dory).  I’m sure the needed pail could have turned up in any number of ways, but Gerald the intellectually disabled/goofy/drunk/I don’t know sea lion was chosen as the vehicle.  And yes, he is excluded and pushed off of a favored rock by two bigger, “normal” sea lions, but again, this type of exclusion actually happens in the real world, so why not portray it in a kid’s movie?  Maybe it gives kids a chance to see that exclusion and think about if it’s good or bad.  Also, I got the sense that the two bigger sea lions wouldn’t have let anyone else on their rock, not necessarily just Gerald.

On the other hand, if Gerald is intended to be intellectually disabled, or even if most people do perceive him that way, then yes, that’s offensive.

Overall, I think the writers did a wonderful job in their approach to disability.  The overriding message is one of inclusion and acceptance; I absolutely love the fact that never in the story is there an attempt to “fix” Dory.  Instead, her limitations are acknowledged and accepted as part of the wonderful, unique person – er, fish – she is, even if various other fish are sometimes annoyed with her (which is pretty true to life).

The theme of “family” also resonated with me.  The story illuminates the fact that “family” isn’t necessarily about who you’re related to by blood, it’s about who accepts, loves, supports you and sticks by you.  That is one of the driving forces in my life, so that message was very meaningful to me.

me-before-you-posterI wanted to also talk a bit about Me Before You.  I have not seen the movie, although I want to very much and definitely will at some point, but I did read the book and loved it.  I wrote about it here.  It seems that there has been a great deal of controversy about the movie and its portrayal of disability – particularly quadriplegia.  The movie is apparently perceived by many as deeply offensive and ableist, mainly in that (SPOILER ALERT) the quadriplegic character commits suicide.  What I have read is that many people feel that this perpetuates the idea that disabled, and particularly paralyzed, people are depressed, can’t live fulfilling lives, and who could blame them for wanting to kill themselves?

What I don’t understand is why there is all this outrage about the movie, but there was virtually none about the book – which was a bestseller, so it was widely read.  My understanding is that the movie doesn’t stray from the story presented in the book (although I’m sure the book offers a lot more detail and insight into the minds and hearts of the characters, as books generally do have that advantage over movies).  In other words, the movie doesn’t tell a story that the book didn’t already tell, so why the outrage now?

I never felt that the book presented a general picture of disability or quadriplegia.  I didn’t read it and think, “Oh, this is what it’s like to be disabled.”  Instead, what I read was , “This is what this particular kind of disability felt like to this particular character, given his particular worldview and circumstances.”  In the book, Will Traynor is an ambitious, physically active man who gets most of his fulfillment from undertaking dangerous and extremely physically challenging activities, like sky diving and mountain climbing.  There are people like that.  When he becomes paralyzed by a freak accident, that aspect of his life is gone.  To act like one under those circumstances wouldn’t have some MAJOR mental and emotional issues to deal with is foolish and disingenuous, and in my mind, it sets forth a notion that to suffer depression as a result of becoming disabled is a character flaw.  One must be stoic and positive, immediately and always, after all.  Why can’t we talk about disability honestly, and acknowledge that there are things we hope never happen to us or those we love, while still advocating for inclusion, access, and compassion?

In any case, in the book, Will decides to end his life not solely because he can no longer participate in the physical activities that once gave him so much fulfillment, but also because he is now plagued by health problems which are only going to worsen over time.  His physical suffering will increase until he finally dies, most likely from a secondary condition to his quadriplegia.

So, I very much read this as a story that advocates for self-determination and autonomy and dignity – not for seeing disabled people as feeling that their lives aren’t worth living. And I honestly felt that kudos should go to JoJo Moyes for creating a character with such notable limitations who is the love interest in the story.  Louisa, after all, falls deeply in love with Will, and spends most of the book trying to convince him to live (supporting the idea that, in fact, a disabled life is worth living).  Moyes also presents a good balance about quadriplegia and quality of life in the book when Louisa talks to numerous quadriplegic and paraplegic people on a message board, many of whom tell her how fulfilling their lives are.

Again, I haven’t seen the movie yet.  Perhaps the movie doesn’t go as deep into those issues as the book does, I don’t know.  Perhaps the real offense of the movie is casting a non-disabled actor as a disabled character.  Hollywood certainly has a great deal of work to do when it comes to inclusion: too often, non-disabled actors are cast as disabled, straight are cast as gay, and the list goes on.  Marginalized groups are certainly under- and mis-represented in film.

In the end, I am left wondering lately if in our sincere efforts to be advocates and allies, we sometimes go a little too far and look for things to be offended by in everything around us.  I’m not suggesting that we don’t go beyond the obvious and blatant, but there has to be a balance, wherein we support and lobby for equity, equality, inclusion, compassion, and access for all, without losing our sense of humor, or ourselves to cynicism.  If you look hard enough, you can find something that offends you anywhere and everywhere.  And then you’re left not being allowed to actually enjoy anything.

 

School Year Redux

Here we are again, with yet another school year behind us.  It felt a little anticlimactic for us this year, as Joey was the only one finishing up a year of conventional school; there wasn’t that feeling of counting down to summer.  Homeschooling has a way of blurring lines between school days, weekends, holidays, and breaks.

Joey finished up junior high school.  There was a big promotion ceremony for the outgoing eighth graders last week, which, like so many other things these days, was a little overblown (this is eighth grade promotion, not high school graduation; so many ceremonies of life have trickled down to the younger set that I keep wondering what they will have to look forward to), but nice.  Overall, junior high was a pretty good experience for Joey.  It’s an angsty time.  His social circle changed a few times, and his anxieties increased in some ways, which concerns me (especially given what happened with Kevin in high school).  His grades fluctuated, depending on how much of a shit he gave (and it’s hard, as a parent who no longer believes in the institution or policies of conventional school, to enforce the school’s expectations without feeling like a hypocrite), but he finished strong.  Whatever that means – it’s a piece of paper with letters and numbers on it, right?

Anyway, he’s sort of in limbo right now.  All the kids he knows from junior high are going on to high school, and they all know exactly which high school.  Joey might start at his high school of choice come August, but he might not – it all depends on whether we manage to get our house sold over the summer.  There’s a good chance that I’ll homeschool him for a year, because I don’t want to pull him and have him change schools multiple times given our pending move (we’ll rent for a while once we arrive in Oregon while we look for a place to settle permanently). And truth be told, if I had my druthers, we would delay his starting ninth grade for a year – not because he can’t hack it academically, but I think a year to grow (which is what we should have done when he started kindergarten; he has a July birthday, so we could have gone either way) maturity-wise and size-wise would benefit him.  We shall see.

Homeschooling this year definitely had its ups and downs.  I went into the school year feeling excited and confident; I had spent countless hours researching and choosing materials to use with the girls based on their learning styles and personalities, and my own goals and philosophies.  I bought everything ahead of time and was ready to rock and roll.  Of course it didn’t turn out the way I had envisioned.  By November or December, we had ditched almost everything I had so carefully researched and bought because the girls were bored with it, and I was growing increasingly frustrated.  We had meetings and took votes, because I want them to have a voice in their own education.  We settled on a much more relaxed way of schooling which required them to take a lot more initiative and responsibility for their own learning, rather than my forcing formal lessons on them.  All in all, it was a better way to go, but it’s never perfect – probably because parenting and life are never perfect anyway.  I feel like the girls all grew academically this year – except in math, which continues to be the bane, man.  The things I am most pleased about are:

  • realizing that Lilah is dyslexic and taking steps to address that.  When I figured out back in October that she’s dyslexic, so much made sense suddenly about her short history with school and her relationship with learning; it was a revelation.  I have been working with her ever since using an Orton-Gillingham-based program, and she’s made definite strides.  It’s gratifying.
  • the amazing science research projects each of the girls did.  All I asked of them was to choose any science-related topic they wanted, to research it, and present something.  Each of them did something different. Annabelle studied the solar system – she chose the books from the library and read them, she took notes and made an outline, she put together a Keynote presentation and presented it to the whole family, she made a 3D poster representation of the solar system – completely on her own.  All I did was drive her to the library and buy the supplies she asked for to make her 3D poster.  This was a HUGE achievement for this girl who is usually repelled by anything that smells like work.  Daisy studied waves – specifically, what makes waves in the ocean.  She did all the research herself, wrote a report, and did a cool demonstration involving a tub of water, marbles, and a fan.  This was less surprising coming from her, as she is by nature conscientious and responsible.  Lilah studies volcanoes.  She chose books from the library, did research on the internet, made a working model of a volcano (not from a kit), and with a little help from her sisters, made a mini documentary about volcanoes.  They spent several weeks on their projects, and came away feeling great about what they had learned, and what they had achieved.

Homeschooling Finn has been less than glowing.  In truth, I still have a bitter taste in my mouth over how things panned out for him at school.  I believe that pulling him was the best thing for him – but only because the adults in whose charge he was created such a negative environment for him, and it wasn’t supposed to be that way.  At home, we still deal with a lot of negative behaviors with him – and yes, it’s tough and it’s frustrating.  It takes so much patience and perseverance to ignore negative behaviors, offer lots of positive reinforcement, and create opportunities for him to be successful.  I have no doubt that the negative behaviors he exhibits stem from emotional immaturity, frustration at not always being understood and not being able to do all the things he wants to do, and diminished self-esteem from all the negative reinforcement he’s gotten.  The bottom line is that the more positive we are with him, the more positive he is.  Still, I didn’t accomplish much at all with him with regard to academics.  He was so resistant to anything school-related when I pulled him out of school in January that I finally just decided it was best to back way off and give him time to regroup.  I worry about him falling farther and farther behind, but then I ask myself, “Falling behind what?  Behind who?”  It’s not a race.

Scarlett, who will be four (yes, four!) in a few weeks, also benefits from homeschooling – even if she’s not officially being schooled.  She’s my clean slate – completely unsullied by traditional school.  She mixes colors of paint to make different colors, she sounds out written words, she counts and is beginning to understand the concepts of adding and subtracting – but all of it is happening organically, and it’s a beautiful thing to see.

Kevin finished his first year of college.  He’s done well.  He’s paid for it all himself at his insistence; when we’ve offered to help with his tuition and books, he turns us down.  I think he’s owning his own education, and I admire him for it.  He’s talking about an art major; I just want him to be able to make a living and be self-sufficient.  We don’t see a whole lot of him these days; he’s either at school, at work, or hanging out with friends.  He comes home to sleep, and occasionally to eat.  That is the natural order of things, I suppose.  He may not even move with us to Oregon, as he might have the opportunity to rent a room in the home of a friend he’s known since third grade. I have mixed feelings about it.  It’s hard to imagine being that far away from this child in whom I’ve invested so much love and hope and fear for almost 20 years, but perhaps it’s time for him to go forth into the world.

As for summer break, it’s shaping up to be very hectic.  Joey and Annabelle are both at rehearsals every day for the next couple of weeks gearing up for the summer (and final) production of the theater company to which they belong; Daisy is at dance nearly every day, and she too has a show coming up, and other than that, we’re getting the house ready to put on the market, which means purging, packing, cleaning, and having work done.

And that’s all she wrote.

People First Language and Identity: There’s More to the Conversation

I came across a link to this article in my FB newsfeed earlier this evening, and it’s got me thinking about a lot of things.

The first thing I want to say – and I’ve had this on my mind and have been wanting to write about it for some time – is that I’ve moved beyond feeling, and insisting to the world, that Down syndrome doesn’t define Finn.  You know what?  Down syndrome absolutely does define him.  Down syndrome and the particular ways it manifests in him shape so much about him: it shapes how he experiences the world, it shapes how the world experiences him, and to a very large extent – possibly to a greater extent than any other single thing – Down syndrome will influence and even dictate the path his life takes.  So, to continue to say that Down syndrome doesn’t define him is both an untruth and a disservice to him and to all people with Down syndrome.  It’s a disservice because it’s dismissive (by and large by those of us who do not have Down syndrome) of his experience and his identity, and moreover, it relegates Down syndrome to something that is negative and undesirable.  We would never insist that someone is not defined by something that we see as positive (he’s not defined by his wisdom; she isn’t defined by her compassion); we only say this about traits that we perceive as negative, and we say that a person isn’t defined by things we see as negative as a way to try to diminish their impact on the person in question, and really, their impact on us, because those things make us (the people who do not have those particular undesirable traits) uncomfortable.

I’ve begun talking to Finn about Down syndrome.  At this point, I really don’t think he has any understanding of what Down syndrome is, or even how it pertains to him, except that he is aware that he looks like other people with Ds; when he sees pictures of other kids with Ds, he’ll point to them and say “Finn!  That’s Finnian!”  In any case, I want to instill in him from this young age that he has Down syndrome, and that he should feel good about it.  He should own it, damn it.  I never want him to perceive Down syndrome as something negative, something he wishes he didn’t have.  I never want any of my kids to wish they weren’t who they are.

So, this leads me to the People First Language issue.  I admit that I’m wrestling with it.  Amy Sequenzia makes some excellent points in her article (if you didn’t click on the link above, go read it now: People First Language and Ableism), but I feel like some nuances are overlooked.

I still tend to use PFL and appreciate when others do – unless told otherwise by directly affected people (for instance, I am now very aware that autistic people prefer to be called “autistic” and not “people with autism”; I respect this, and therefore have made that change in the way I talk about autism) – where it pertains to Finn.  There are a few reasons for this: first of all, although I do not see Down syndrome as negative or undesirable, and I accept and even embrace that Down syndrome does, in fact, define him, I’d still like to think that our shared humanity is the thread that binds us all together, and what separates us from other beasts.  Maybe this is a Pollyanna-ish view, I don’t know.  In my mind, it’s not that I don’t want people to see his Down syndrome, or that I want to attempt to diminish its impact on him, it’s more like this: if you can see his humanity and see how his humanity relates to your humanity, then hopefully you can see him with compassion – not pity or disdain – and hopefully you can see that he is a whole, complex human being, and not a subhuman defect.

There is also the problem of word usage and how awkward it can be.  I’m talking about grammar, I guess.  See, while autism has an adjective equivalent (autistic), Down syndrome does not.  So when someone says, “He’s Downs,” or “the Downs kid,” it grates on the ear (at least mine) because “Downs” is not an adjective.  Plus, I guess I have somewhat of a problem with using the name of the guy who believed and promoted the notion that people with Down syndrome were actually an entirely different species – a sort of subhuman species that had manifested from some sort of reverse evolution – to identify my kid.  Yes, I still use the term “Down syndrome” to describe my son even though I’m not a huge fan of Dr. John Langdon Down’s ideas, but only because it’s the term that most people are familiar with.  If you say, “Trisomy-21,” most people have no idea what you’re talking about.

Anyhow, so there is no adjective version of Ds or T-21 that I’m aware of that would make “_______ person” sound right, from a linguistic standpoint.  Ds isn’t the only disability like this; what about cerebral palsy?  Would you say, “she’s cerebral palsy,” or “the cerebral palsy man”?  Or pretty much any “syndrome.”  How about Williams syndrome or Fragile X syndrome or Prader-Willi syndrome?  None of those have adjective equivalents, so it’s just awkward to use them as adjectives.

So, let’s just say “disabled” then.  I can get on board with that, except that it’s just such a negative word.  I mean, if you disable a smoke alarm or a machine or a bomb, you render it inoperable.  Are disabled people inoperable?  Do they no longer “work”?  No.  And if you think about it, all of the most common “dis” words in the English language are negative: dismember, disenfranchise, disrespect.  In fact, the dictionary defines the prefix dis as follows:

Screen Shot 2016-03-03 at 8.58.12 PMI wish we had a word that wasn’t itself so negative.  “Differently-abled” doesn’t work, either, because in its insistence on focusing on ability, it’s ableist.  So where does that leave us?  I don’t know.  I guess we’re stuck with “disabled” and all of its inaccurate and negative connotations.

Perhaps I’m splitting hairs over language and terminology, but I think all of these subtleties are worth contemplating.  A big part of the problem is that, yes, it’s very often – probably almost always – people who are not disabled who are deciding the language that gets used.  A lot of them, like me, are parents of children with one or another diagnosis – parents who do not themselves have those diagnoses.  A lot of us are thrust into this world of disability, and we’re trying very hard to be advocates for our children, and, yeah, we fuck up along the way.  Speaking for myself, having Finn was my first ever experience with disability.  When he was born, I didn’t know Down syndrome or disability from my ass.  God, some of the things I thought and said and felt in the beginning truly make me cringe now.  But there was never a single moment when I did not love my son fiercely, and all along I’ve tried to advocate for him and for the larger disability community.   I heard and read things over the years that resonated with me and made perfect sense to me – like People First Language.

Advocacy changes; the language that we accepted a few years ago is now offensive, so now we advocate for new language.  That language will one day also be offensive, because it will be misappropriated and turned into slurs, or it will take on new ableist connotations.  Hot button issues of today will be replaced with hot-button issues of tomorrow – perhaps issues that we can’t even conceive of today.

So, what I’m getting at is that it’s just not so cut and dried.  Being an advocate and a true ally is an ongoing, lifelong process of listening, reflection, introspection, contemplation, and growth.

 

Miscellany

Hello there.  I’ve missed you all, too.  Life is busier and I am more frazzled than ever.  Here’s a rundown on the newsworthy and the not newsworthy:

Homeschooling has become pretty much a full-time job.  In fact, Michael even said to me recently, “Wow, it’s like you have a full-time job.”  (Because, you know, I was living a cushy life of leisure before I started homeschooling.)  It’s not that our school days last all that long; in fact, we still almost always finish up by lunch time.  It’s that I spend so much time thinking about it and worrying about it and reading about it and trying to figure it out.

I’ve become a lot more relaxed about curriculum and lessons – I wouldn’t say that we’re unschooling exactly, but probably a hybrid of unschooling and relaxed schooling –  and the girls are becoming more independent and self-directed in their learning, although Lilah still needs quite a bit of help and input, and the program we’re using to address her dyslexia involves formal daily lessons and exercises.  For the most part, the girls and I talk about goals, we have a loose schedule hanging on the refrigerator which they consult, and they pretty much run with it, and I feel like my role is more and more of a guide or consultant.  And sometimes a moderator, because let’s be honest: put a handful of kids together day after day and they’re bound to get on each other’s nerves, antagonize each other, and vie for attention. But that’s just siblings, homeschooling or not.  Also, Annabelle continues to challenge my patience and stamina, as she has since toddlerhood.  She’s the clown, the goof ball, and the least cooperative in all things.  She and I butt heads a lot, which saddens me.  Sometimes I see my relationship with her fulfilling my worst fears about having a daughter – but that’s fodder for a whole other post.

I’m still trying to find a groove with Finn.  I don’t feel that unschooling can really work for him, because he is absolutely not self-directed.  He would be content to play on his iPad all day, every day, maybe for the rest of his life.  He’s curious about the world around him to a degree, but he has no innate interest in or motivation to learn to read or count or write or any of that boring stuff, nor does he have any concept of the value of those things, so educating him is a whole different ball game than educating his typically developing siblings.  I have to be very deliberate in teaching him, and I have to find ways to do it that are interesting and palatable to him, and right now I really have my work cut out for me because I think the last few months of school really tweaked him and turned him off to the whole idea of sitting down and learning.  So we’re taking it slow, and sometimes I feel a little panicked because I feel like we have so much lost ground to make up, and so much new ground to cover.  So I have to stop periodically and take a deep breath and remind myself that all we have is time, and there is nobody and nothing we need to catch up to.I’ve taken up knitting.  This isn’t news if you follow me on Instagram or Facebook.  Anyway, I’ve wanted to learn to knit for years and years (and I still want and plan to learn to crochet), and I finally bought some yarn and knitting needles and an instructional book for beginners (which didn’t help much; I find that I learn much better by watching, so YouTube videos have been awesome), and began with a scarf for myself in my favorite color:IMG_1226knits

Since then I’ve knitted a couple more scarves and hats, but I want to move on to some more complicated projects.  I love it, I really do.  It’s very Zen for me.  After the kids are in bed, I climb into bed and knit while I listen to a book on Audible.  A girlfriend (who is a longtime knitter) and I have started getting together at each other’s houses on Friday nights and knitting together over drinks.

Michael was gone for most of last week, in Portland taking the Oregon bar exam.  That’s right folks – this whole moving to Oregon thing may really happen.  It’s exciting and scary as shit.  But first things first: bar results will come out in a few weeks.

I am having a hysterectomy in less than a month.  I’m sure, being the over-sharer that I am, that I’ll write more about it as it gets closer, but for now, I’m having a lot of mixed emotions about it.  It’s all part of improving my quality of life (I pee myself constantly.  I’ve had seven babies, yo.  It takes a toll on a body), and that part I’m looking forward to, but gosh darn it, I’m pretty attached to my womb.  We’ve been through a lot together.

There are other topics flittering around in my head that I want to put words to here sometime soon, but for now, this is the nitty-gritty.

Until next time …

Footnote

As a footnote to Finn’s school saga, I contacted his former teacher (and cc’d the principal) earlier this week, inquiring about Finn’s classwork.  Nothing had ever been sent home with him – not a single writing assignment, coloring page, or art project.  Nothing.  I had been aware of it as the weeks and months wore on, but I guess somewhere in the back of my mind I kept expecting a big pile of stuff to come home with him.  But nothing ever did – not even when I officially requested his cumulative student record when I pulled him from school a couple of weeks ago.  So I sent an email earlier this week briefly explaining that nothing had ever come home with him and asking that any and all of his schoolwork be gathered together and left in the front office for me to pick up.  It took twenty-four hours to receive a response, and it was from the principal and not the teacher.  It informed me that Finn’s classwork was ready to be picked up in the front office.

I picked it up yesterday.  There was a fair amount of stuff – not nearly as much as you would expect from half a school year from a “typical” first-grader, but a fair amount.  Stuff dating back to the beginning of the school year.  A pumpkin art project obviously from October.

And this little gem, with my annotations:

School Rules

I’ll be honest: I don’t much care about the actual contents; it’s water under the bridge at this point (and most of it was worksheets that his aide had clearly had a big hand in doing).  It was the principle of it: why the fuck hadn’t his work been being sent home with him all along?  Why wasn’t he treated like a student instead of a problem?  I wanted to force their hand and get an explanation.

None, of course, was forthcoming.  I responded to the principal’s email asking her why Finn’s work had not been sent home at regular intervals all along, and asking if they ever had any intention of making sure we received his work, since it took me pointedly asking for it two weeks after he was disenrolled in order to actually get anything.  No response has been forthcoming, and I have no doubt that none will.

So, I’d just like to say to anyone who has ever hassled me for not falling all over Teacher Appreciation Week, for not buying into the whole Teachers Are Martyrs and Saints mindset: piss off.  We’ve had our share of negative, and even downright painful, teacher experiences.  Some teachers are truly wonderful – we’ve had those, too.  And some are damaging, or at least complicit in a system that is damaging.

So, I wash my hands of it.  I know that I need to find a way to let go of my anger and disappointment and move on, and do the things for my kids that school couldn’t or wouldn’t.

When Inclusion Doesn’t Work

I’ve taken this whole thing with pulling Finn from school much harder than I anticipated I would.  I spent the better part of last week in a funk, feeling very much like I was grieving.  This isn’t how it was supposed to turn out, and I am bitterly disappointed.  More than any of my other kids, I really wanted school to work for Finn because I believed that the seeds of inclusion for life in the larger community would be planted at school.  While my feelings about conventional school have changed greatly over the last few years, the fact remains that most kids spend their formative years in school, and the people Finn will be adults with are people who are children in school now.

One of the things that bothers me the most is that now that Finn is no longer in school, I think in many people’s minds he will just go down in the annals of “See?  Inclusion Doesn’t Work.  Kids With Special Needs Don’t Belong in Regular School With Regular Kids.”  Even the handful of moms whose kids went to school with Finn whom I’ve reached out to, just to let them know that Finn won’t be at school anymore – I know I’m assuming a lot here, but I have little doubt that they probably are of the mind “Well, it’s unfortunate, but not surprising.”  In other words, I think most people still don’t expect “special” kids to be in regular classrooms.

I wanted to blaze trails – or if not that, then at least make things easier for the next kid with an intellectual disability who comes along to this school in this district and who demands his or her rightful place in the general population.  But now, Finn’s case will just be more useful for the district and the school to resist inclusion.  They can continue to pat themselves on the back for having that really great program for the autistic kids – you know, “Project Success,” where they stick the kids with autism in a portable classroom out on the back forty – as far away from the hub of the school as you can get (true story, this).

Here’s what I want people to know: Finn’s inclusion didn’t work because the system failed him.  Because the adults who run this racket failed him.  The school district failed him, the school failed him, and yes, his teacher failed him.  And I will go so far as to say with conviction that in the vast majority of cases of inclusion not working, it is the failure of the system, not the child.

I am resentful that from the start, when Finn transitioned to the school district at age 3, the school district did everything possible to throw up roadblocks and make it as miserable an experience as possible.  I am angry over the thousands of dollars we spent on legal fees to get Finn’s basic legal rights honored by the school district, over the countless hours of meetings, of the volumes of letters and emails that went back and forth between us and the school district, of the fucking games the school district played including outright lying to us.  I am sick over the fact that in two and a half school years in public school, less than half of that was a positive experience.  TK sucked, mainly because the teacher didn’t know what to do with him and largely saw him as a problem.  Kindergarten was a dream, because the teacher believed in Finn, believed in his value as a human being, and was committed to everything inclusion means.  And first grade sucked, because again, Finn got a teacher who didn’t know what to do with him and largely saw him as a problem.

In one of the last communications I got from Finn’s teacher, she complained to me that “He has been playing with his long sleeve shirts a lot by pulling his arms out of his sleeves and lifting his shirt up.”  This, of course, was not the only problematic behavior he exhibited at school, but seriously, why was this even worth mentioning?  How many other first-grade boys are engaging in obnoxious or annoying behaviors like that?  And do their parents get to hear about it?  Was it hurting anyone?  Perhaps it was a distraction to the other kids.  I ask again: how many other first-graders are engaging in obnoxious or annoying or distracting behavior?  But for Finn, everything was scrutinized and deemed a problem.  This was a clear illustration of the teacher expecting Finn to accommodate everyone else rather than being afforded simple accommodations like overlooking odd behaviors that weren’t hurting anyone.

Please, spare me the sad song about how hard teachers have it.  You know what’s hard?  Being a kid with a disability in an ableist world.  Being a kid with a disability in an ableist school, in a school that would rather see you safely stowed away in a segregated classroom where you won’t bother anyone.  Being a kid with a disability in a classroom with a teacher who sees you as a problem to contend with.  That’s what’s fucking hard.

We could have stuck it out.  We could have kept fighting the good fight instead of giving up.  But the thing was that all I saw ahead of us were years and years of this shit.  Years and years of meetings and reports and paperwork and fighting with school districts and schools and teachers.  And maybe having a good year sprinkled here and there, but mostly the constant struggle of trying to get his needs met, trying to make people get it.  And meanwhile, his childhood is going by, and it’s time that will never be gotten back.

And I just couldn’t do it anymore.

And, yeah, I’m bitter.

But we pick ourselves up, and move forward.  We adjust to a new plan.

For the time being, I’m keeping homeschooling very low-key with Finn.  In truth, he still doesn’t understand that he’s not going back to school.  He still asks about it.  It was part of his routine, what he was used to.  And with the upheaval of him getting so sick and being in the hospital the first week he was out of school, we’ve barely dipped our toes into anything schoolish.  He has no IEP now, nor any ISP (Individual Service Plan, whereby homeschooled children with disabilities can still receive certain services, like speech therapy, etc., through the school district), which means we have no set educational goals, and he won’t receive any therapies.  I am completely okay with that; this was our choice.  I’ve never been big on therapies anyway, and I’m washing my hands of this school district (Joey will soon finish eighth grade and that will be that).  I filed a PSA (Private School Affidavit) with the state this school year, so I’m homeschooling the kids completely independently and autonomously – exactly how I want it, thank you very much.  We’ll figure it out.  I want to focus on the basics with Finn for now – reading, printing, counting – and we’ll take it from there.  Mostly, I want to build up his confidence and self-esteem, and undo the damage that school did to him this year.

Field trip to the arboretum

Field trip to the arboretum

Letter sent disenrolling Finn from school:

Screen Shot 2016-02-08 at 10.33.31 PMScreen Shot 2016-02-08 at 10.33.46 PM

Ableism and Inspiration Porn at School

Following is a letter I sent to various parties at Joey’s junior high school, as well as to the District Superintendent and the District Director of Special Education, in response to a choir concert held last week in which the choirs from all of the junior high schools in the District took part.  I am posting it here to preserve it, and to raise awareness of the fact that our schools and our society are still rife with prejudice against the disabled.  So often, prejudice manifests in subtle ways, in ways that are generally seen as benevolent – but make no mistake: prejudice in all forms does damage.

*****

Dear *,

I’m writing to express some deep concerns regarding the * choir performance at * Auditorium last Friday evening. As you know, our eighth grade son, Joey, is in advanced choir. I was not able to attend the performance, but my husband and my older son did, and I did see a video of the performance I am writing to you about, which was the performance of “I Am His Child” by the Advanced Women’s Ensemble and Special Guests.

While I have no doubt that the intentions behind that performance were good, it was disturbing for several reasons. The first thing that raises concerns was the introduction. I believe it was you, Ms. *, who introduced the performance by telling the audience that something “magical” had been happening at *, and then going on to say that Ms. * had been working with her own choir students and students from *’s Special Day Class, and that they would now be performing.

At first blush, it may be hard to see why this would be problematic. However, none of the other performances got special introductions. Why did this one? Why was it necessary to identify this as different from or more special than any of the other performances? Why was it necessary to call attention to the fact that some of the students performing this particular song were from the SDC? Rather than being unifying, this is divisive; it only serves to further “other-ize” kids with disabilities.

Second, what exactly was “magical”? That Ms. * deigned to work with the kids from the SDC? That the “regular” kids spent time with the kids from the SDC? That the kids from the SDC could actually learn a song? I doubt any of this was in anyone’s conscious thought process, but it is, in fact, the message that is perpetuated.

To offer some context, imagine that this was fifty years ago, and some children from the segregated black school were allowed to perform at a concert with the white children, and imagine that performance being introduced in the same manner: calling it “magical” and calling attention to the fact that it’s a big deal that the “other” children are performing with the “regular” children. How does that feel?

There is a term used within the disability community, and it is “inspiration porn.” Inspiration porn refers to incidents in which people with disabilities are objectified in such a way as to allow non-disabled people to feel good and even applaud themselves and/or each other for merely behaving in ways that decent, compassionate human beings should behave in – for instance merely being kind or inclusive, which should not be worthy of special attention or recognition. Sadly, the way this performance was introduced smacks of inspiration porn, and that is ableist.

Aside from the choice of song being blatantly religious in nature, and therefore wildly inappropriate for a public school choir performance, the most disturbing thing of all was that particular song. Here are the lyrics:

I may not be all that you are,
I may not be a shining star,
but what I am
I thank the Lord
for making me His child.
Thank you Lord for hearing ev’ry prayer,
Thank you Lord for just being there,
Thank you Lord,
for I am not worthy of your Love.
I may not be, …

So don’t use me or abuse me,
for I am His child.
Don’t tease me, or mistreat me,
for I’m still His child,
you can even talk about me.
But I’m still His child.

I’m not sure I can even express how this makes me feel, as the mother of a child with a disability. You see, Joey’s younger brother has Down syndrome, and I have spent the last seven years, since he was born, waging a battle against ableism, segregation, and prejudice based on misconceptions and stereotypes. I can’t figure out why anyone would choose a song with those lyrics for kids with disabilities to perform. Aside from the religious nature of the song, it is filled with messages of inferiority, helplessness, victimhood, and weakness. It’s not edifying in the least. Paired up with kids with disabilities, it perpetuates ideas that kids with disabilities are unworthy, broken, sad specimens who deserve pity and charity. It did not build anyone up except the non-disabled people present; it only tore down the kids from the SDC and further marginalized them.

Again, I have no doubt that the performance was undertaken with the best of intentions, but it was sorely misguided, and sadly, it accomplished exactly the opposite of what you were probably trying to achieve. It would have been far better to (a) choose a different song, one that was just fun and didn’t attempt to convey any sort of message about the kids performing it, and (b) have the students perform without any special introduction, especially one that drew attention to what made them different or “special.” Being inclusive should not be noteworthy.

As the parent of a child with a disability, I would be remiss if I did not reach out to you about these concerns, and it is my hope that you will take them to heart.

Respectfully,

Lisa Morguess

Finn’s Big Adventure

We had quite an upheaval last week; Finn was a very sick little boy and ended up in the hospital for a couple of days.

It all started last Saturday.  I noticed in the morning that he had some faint pink patches on his face.  I didn’t think much of it, as he often gets patches of chapped skin on his face.  By later that afternoon, however, the patches had grown bigger, darker, more defined, and slightly raised.  My first thought was that he was having an allergic reaction to something, but I couldn’t think of anything new or unusual that he had been exposed to.  He was acting as if he felt fine, so I wasn’t overly concerned.  I did post a couple of photos on FB out of curiosity, though (which may have been a mistake).  The general consensus on FB was that he was either allergic to something, or he had Fifth Disease.  I didn’t think it was Fifth, as I’m pretty sure he had that already a few years ago.

Saturday afternoon

Saturday afternoon

Saturday night he had a low-grade fever of 99.1.  I gave him Tylenol and put him to bed.

He vomited several times during the night on Saturday, and Sunday morning his fever had spiked to 104.3.  The red patches had also spread, and the left side of his face was puffy.

finn0124

Michael and I took him to the ER at the hospital right up the street.  After examining Finn and asking us about his symptoms, the ER doctor concluded that he had some virus that just needed to run its course.  He didn’t think any tests were necessary, and didn’t think we should be overly concerned.  We were advised to alternate Tylenol and Motrin for his fever, and that was it.  So we went home, and that’s what we did.

Although he didn’t vomit anymore after Saturday night, his appetite diminished and his fever went up and down, and by now, he clearly didn’t feel well.  He mostly just laid around on the couch or on our bed.

Meanwhile, Michael had booked a cabin up in Big Bear.  He was planning to take the three older girls up there for a couple of days to take snowboarding/skiing lessons.  They were supposed to leave Monday morning and stay until Wednesday.

Monday morning, Finn’s appearance was alarming.  The entire left side of his face was swollen, and his left ear was like a fluffy little pancake.

Monday morning

Monday morning

I had Michael take him back to the ER.  Again, the conclusion (by a different ER doctor) was that Finn just had a virus that would pass in time.  By now I was a little frustrated that nobody seemed to be more concerned, and that they didn’t even run any tests.  And of course by now, my FB feed was exploding with theories and horror stories about strep and Kawasaki disease and all kinds of other scary stuff.

Michael went ahead and left town with the girls.  I wasn’t totally comfortable with this, but the fact was that we had taken Finn to the ER twice, and both times had been told that Finn was fine.

By Monday night, Finn looked like this, and I was freaking out:

Monday evening

Monday evening

Finally, I decided screw this, I’m not messing around with the regular hospital, I’m taking him to the ER at the children’s hospital.  So I left Kevin with Scarlett and Joey, got Finn into the car, and headed to CHOC.  When we got there, he waiting room was packed – standing room only.  They took one look at Finn, though, and took him right back.  His temperature was 103.5, so they dosed him with Motrin right away.

I should stop here and explain to you about Finn’s absolute terror of doctors, doctors’ offices, medical equipment, and the like.  I don’t know where this fear of his comes from – it’s really hard to say.  Yes, he had to undergo quite a few unpleasant medical procedures when he was a baby, but I doubt he remembers those, and anyway, this terror really didn’t begin to manifest until he was probably around four years old – and by then, it had been a long time since he had undergone anything painful or traumatic.  So, in a way, it’s like it came out of nowhere, but the level of his fear is absolute, unbridled terror.  Every doctor appointment, every dentist appointment, every ophthalmologist appointment is an ordeal that involves screaming, flailing, crying, and him having to be basically held down.

So, imagine what an emergency room visit might be like for him.  And now, imagine what it would be like for a child with that level of terror to be put on a gurney and have dozens of doctors and nurses coming in and examining him, putting a thermometer under his arm repeatedly, putting a blood pressure cuff on his arm or leg repeatedly, putting a pulse oxymeter on his finger or toe repeatedly, sticking a tongue depressor in his mouth and looking at his throat repeatedly, shining a light in his eyes repeatedly, and then holding him down and placing an IV in his hand and then wrapping his arm and hand up in a splint so he couldn’t pull the IV out (which he almost managed to do anyway; it was a bloody mess and had to be redone a few hours later).  And then imagine being told that he needed to be admitted, which meant that child was going to have to somehow cope with this for a long while.

It was pretty much hell.

Finn and I spent fifteen hours in the ER, because even after I was told that he needed to be admitted, there were apparently no beds available.  In the ER, they gave Finn a steroid (orally), as well as Benadryl every four hours.  It did not seem to help the swelling.  He also got a unit of antibiotics intravenously.  His fever never returned after that, but that may have been coincidence.  They had given him Versed to calm him before they placed the IV (it didn’t seem to calm him).  Finn finally dozed off at some point, and slept for an hour or two, but then woke up screaming, and he screamed relentlessly for the next couple of hours, until I begged them to give him something to calm him.  They then gave him a dose of Ativan intranasally.  After awhile, he dozed on and off, fitfully, with me squeezed next to him on that awful gurney.  I woke at some point, soaked in his pee.

I had talked to Michael during the night, and he packed the girls up first thing in the morning and headed back from Big Bear.  Finn was finally moved to the overflow unit from the ER late Tuesday morning.  We were told that there were still no beds on the floor available.  Michael got to the hospital a little before noon, and when I heard his footsteps from across the unit, I swear it was like this giant weight being lifted.  I left for a few hours, went home and showered and saw to the other kids, grabbed some things for Finn, and went back to the hospital for a couple of hours.

Tuesday evening

Tuesday evening

Finn was finally moved to a bed in a hospital room that night, twenty-four hours after he and I had first arrived at the ER.  Michael spent that night with him, and I went back to the hospital Wednesday morning.  By that time, the swelling in his face had finally begun to lessen, and he had been fever-free for over twenty-four hours.

Wednesday morning

Wednesday morning

We still didn’t have any answers, and honestly, once he moved out of the ER and into the overflow unit, he was only being observed and not treated, although they ended up drawing blood three times and running labs, as well as taking viral swabs from his throat and nose, and checking his urine numerous times.  When he went into the ER, he had a fever of over 103 degrees, he was spilling protein in his urine, his white blood cell count was extremely elevated, as were his inflammatory markers and CRP level.  All of this pointed to some sort of infection, but they were unable to pinpoint what type of infection.  Everything they screened for was negative, so they ruled out a lot, but couldn’t figure out what he did have.

By Wednesday afternoon, his white cell count and inflammatory markers had improved enough that they discharged him.

Late Wednesday afternoon, going home!

Late Wednesday afternoon, going home!

They concluded that he had caught some weird virus that they were not able to identify, and had a severe allergic reaction to it.

Finn was glad to be home – and his brothers and sisters were so thrilled to see him get out of the car in front of the house – but the whole ordeal had taken a toll on him.  It was all very traumatic for him, despite the fact that everyone in the ER and the hospital was incredibly kind and compassionate and patient.  They really were just awesome – could not have asked for better care.  The next couple of days were rough for Finn – he was very out of sorts, very tearful and clingy and prone to angry and emotional outbursts.  The swelling is completely gone now, and his face and ears are still peeling.  He’s more back to his old self now.  We had a follow-up visit with his pediatrician on Friday, and he seems to agree with the hospital’s conclusion about a virus and an allergic reaction.

Thursday morning

Thursday morning

Friday morning

Friday morning

Even though I guess the first two ER doctors ended up being right, I’m still glad that I took him to CHOC, and that they diligently investigated.

This whole experience has made me very conscious of and grateful for Finn’s overall good health.  In the gamut of things, this really was a minor blip.  There are kids out there who experience far more serious illnesses and health problems, and who spend far more time in the hospital and undergoing all kinds of traumatic medical procedures.  Generally speaking, Finn is a very healthy little boy who has no chronic health issues.  We’re very fortunate.

In the end, Finn’s illness is a mystery, but all’s well that ends well.

 

Another Casualty, A New Adventure

After months of problems at school, months of repeated meetings, and months of agonizing, we made the decision yesterday to pull Finn from school.  Yesterday was his last day.

As I said, it’s been months of shit, to put it bluntly.  But yesterday in particular, a couple of things happened that were the final straws:

As I walked Finn to school yesterday morning, the whole way he recited, “No screaming.  No hitting.  No spitting.  No running.  No throwing.” And on and on.  And something just broke inside me.  All he associates school with, I thought, is being reprimanded, of being seen as bad.  He has completely absorbed that message.  I was ready, walking and listening to him, to bypass his classroom, march to the front office and tell them that we were pulling him.  But I restrained myself, knowing that I had to talk it over with Michael (I’ve been working on him about this for a while, but now push had come down to shove).  So I took him to his classroom and went home.

Later in the morning, the mailman knocked on our door.  There was a certified letter I had to sign for, and it was from the school district.  In a nutshell, the district was objecting to the consent form we returned to the school last month conditionally consenting to only some of the battery of triennial assessments, and declining others.  The district was essentially attempting to bully us into consenting to all of the assessments, on the district’s terms – despite the fact that parents are well within their rights to pick and choose which assessments to consent to.

Reading the letter, I felt both pissed and weary.  It was the same crap from our battle with the district three years ago.

And you know what?  I just can’t fucking do this anymore.  I can’t keep fighting a system that continues to make every goddamn thing an exhausting uphill battle.

And I can no longer in good conscience send my kid into an environment that is overwhelmingly negative towards him.

So I will now be homeschooling Finn.

Although I believe in homeschooling, I am scared.  I’m far from an expert in homeschooling (if there is such a thing), I often feel discouraged with what I’ve already taken on, and it’s all been so much trial and error so far.  How will that be for Finn?  On the other hand, it can’t be any worse that what he’s gotten at school this year.

In truth, I am angry that the system failed him so miserably.  I feel utterly defeated, too; we fought so fucking hard for inclusion.  So hard.  And it’s all come to this.  They win.  My non-conforming son is out of their hair.  I feel grief, too; we had such grand visions of how it might be for Finn at school – warmly embraced, lots of friends and support – and it’s come to naught.  It is especially painful in light of how wonderful his kindergarten year was last year – we got to see what is possible.  I’ve spent the day crying on and off, filled with anger and sadness.

So that’s it.  I’ll shake these dark feelings and keep moving forward.  Nothing else to do.

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